MultiQOL Study: an investigation into the quality of life of parents of multiple birth children with and without developmental disabilities

The MultiQOL study is a two site self report cross sectional survey. Potential participants will be identified by search of hospital patient databases. Participants in the Royal Women’s Hospital arm of the study will be 65 mothers and 65 fathers of multiples who have received care through the hospital (with multiples aged between 12 months and 5 years). Most will have received antenatal care at RWH, and have been born there, however some will have been transferred as neonates.

The second group of 65 mothers and 65 fathers of multiples in the Royal Children’s Hospital arm of the study will be parents of twins, triplets and more aged between 12 months and 5 years, one or more of the multiples have been cared for by the Department of Developmental Medicine at RCH, Melbourne. This encompasses children with diagnoses such as developmental delay, cerebral palsy, autism spectrum disorders, spina bifida, Rett’s, Prader-Willi and Down syndromes, intellectual disabilities and acquired neurodevelopmental disabilities.

Statistical analysis will compare groups (eg prevalence of relatively poor quality of life) and explore the interaction between measured factors. Further analysis of data will allow identification of family and individual characteristics rendering parents particularly vulnerable to experiencing poor quality of life. Determining which of those characteristics might be amenable to change (eg by enhance support) has important implications for providers for care for multiple birth families, particularly those with children with disabilities.

An evaluation of the reduced impact of IVF on multiple pregnancy in Australia since 2005

Treatment with assisted reproductive technologies (ART), in particular in vitro fertilisation, is widely attributed as being the major driving force behind the increased numbers of multiple births. As the success of ART treatment improves, the potential for a multiple pregnancy also increases unless appropriate measures are undertaken to increase the rate of singleton pregnancies whilst restricting the number of multiple conceptions.

Our analysis of published reports suggests that ART now plays a relatively lesser role in the number of twin pregnancies conceived in Australia. However, ART still contributes approximately 20% of all multiple births from less than 4% of all conceptions. Comparatively, over the same time period, ART has been responsible for significantly less of the higher order multiple pregnancies in recent years, primarily as a consequence of policies of single embryo transfer.

A detailed analysis of the available Australian data has ben undertaken and contrasted with international results. This review is now ready for submission.

Multiple pregnancy outcomes for pregnancies affected by a neural tube defect at the Royal Women’s Hospital: 2001-2011

Dr Vanessa Hughes, Dr Nicole Woodrow, Clin Assoc Prof Mark Umstad

Historically, twin pregnancies where one fetus has been affected by a neural tube defect have had significantly adverse outcomes. The poor outcome is often related to polyhydramnios and subsequent premature labour.

We are retrospectively reviewing all multiple pregnancies at the Royal Women’s Hospital between 2001 and 2011 that have been identified as having at least one of the fetuses with a neural tube defect.

The review will include those that have undergone selective fetal reduction, will assess the impact of chorionicity and will evaluate the obstetric and neonatal outcome for this group of women.

It is anticipated that approximately 20 pregnancies will have been affected by the combination of a neural tube defect and a multiple pregnancy. Guidelines for subsequent management will be developed based on the findings of our study and a review of the International literature.

Outcome following diagnosis of a single umbilical artery in twin pregnancies at the Royal Women’s Hospital 2003 to 2012

All twin pregnancies in which a single umbilical artery has been detected in either or both fetuses will be identified via the viewpoint ultrasound database. The obstetric, perinatal and neonatal outcomes of these fetuses will be determined.

A similar project is underway investigating the outcome in singleton pregnancies and comparison of the data may be appropriate.

Outcome of both single and multiple pregnancies following chorionic villous sampling or amniocentesis

We are proposing to undertake a retrospective audit of medical histories at The Royal Women’s Hospital, specifically looking at pregnant patients who have had a Chorionic Villous Sampling (CVS) or amniocentesis performed as part of their prenatal diagnosis in the Royal Women’s Hospital (RWH) Ultrasound Department.

The audit is investigating:
- The prevalence of diagnostic testing by type and gestation in singleton and multiple pregnancies.
- The rate of miscarriage following the procedure in singleton and multiple pregnancies by experienced operators.

The miscarriage rate following a CVS or an amniocentesis is commonly quoted as 1/100 and 1/200 respectively. These figures are derived from multi-centre randomized trials performed in the early 1990’s). There are no large recent published studies which have been performed in Australia by only experienced operators . The acceptability (take-up rate) and miscarriage rate for prenatal diagnostic testing of multiple pregnancies in Australia has been poorly researched. The safety of CVS in multiple gestations has been addressed overseas only by small case-control and cohort studies performed greater than 10 years ago.

Our audit is assessing outcomes of what is currently “standard of care”. We are not undertaking any further intervention on the participants than what is medically advised. We do not believe that there is any risk to participants in our conducting of the audit. The primary aim of the study is to assess the acceptability and safety of procedures which are routinely offered to pregnant women who are considered at high risk for aneuploidy.

The audit will involve the analysis of ~500 medical records at RWH. We are planning to access the data via Ultrasound records (Viewpoint), Clara Database and from medical records/ the referring doctor’s obstetric summary where necessary. As this is a retrospective audit, which aims to document current practice and outcomes in these women, we believe that this fulfils the criteria for a quality assurance project and therefore does not require specific approval from the Research and Ethics Committee. However, we do hope to be able to publish these data and thus would be grateful if you could provide a letter of acknowledgement.

We intend to supplement the study with data obtained from private patients from the same experienced operators. We will be submitting a separate Ethics application to the Epworth/Freemasons Hospital to obtain approval. This will bring our sample size to >1000 allowing us to have meaningful data.

Outcome of monochorionic twins at the Royal Women’s Hospital 2000 - 2010

Dr Mark Petris, Dr Steve Cole

The outcome of all monochorionic twins managed at the Royal Women’s Hospital over the last ten years is to be evaluated.

Pregnancy outcomes in women diagnosed with Down syndrome in a multiple pregnancy at the Royal Women’s Hospital

Dr Laoise O’Brien, Dr Eleanor Egan, Clin Assoc Prof Mark Umstad

We are undertaking a retrospective audit of medical histories at the Royal Women’s Hospital to look at the pregnancy and neonatal outcome for all women diagnosed with a Down syndrome fetus in a multiple pregnancy over the last ten years.

The audit will investigate obstetric complications that develop in these pregnancies, the natural progression of Down syndrome in these multiple pregnancies, and the obstetric and neonatal outcomes for these pregnancies.

The audit will allow us to get a clear idea as to the outcome of women who are managed at the RWH with Down syndrome in a multiple pregnancy.

A review of umbilical arterial thrombosis at the Royal Women’s Hospital 2000 to 2010

Dr Fiona Brownfoot, Clin Assoc Prof Mark Umstad

A recent case of a thrombosed umbilical artery prompted a review of the literature. This has been identified as a very rare event often with significant adverse outcomes.

A review of all cases at the Royal Women’s Hospital from 2000 to 2010 will be undertaken pending Research and Ethics approval.

Risk of preterm delivery in multiple pregnancy

Clin Assoc Prof Mark Umstad, Dr Nicola Yuen, Dr Patrick Harrington

This is a retrospective audit of medical histories at the Royal Women’s Hospital. We will be looking at the pregnancy and neonatal outcomes for the following women over the last 10 years:

-Those that are pregnant with a singleton pregnancy having had a twin pregnancy in their immediate previous pregnancy
-Those with a twin pregnancy who delivered prematurely in their previous singleton pregnancy
-Those that are pregnant with a twin pregnancy having had a twin pregnancy in their immediate previous pregnancy

The audit will investigate:

-The risk of preterm delivery of twins if the previous singleton delivery was preterm
-The risk of preterm delivery of a singleton if the previous twin delivery was preterm
-The risk of preterm delivery of twins if the previous delivery was of twins
-The obstetric and neonatal outcomes including rates of prematurity, nursery admissions and perinatal mortality

Triplet pregnancy outcomes at the Royal Women’s Hospital: 2000-2010

All triplet pregnancies at the RWH from 2000 to 2010 will be analysed to evaluate the perinatal, neonatal and maternal outcomes. These outcomes will be related to placental chronicity. Data will be obtained on the demographics, gravidity, parity, mode of conception, antepartum complications, mode of delivery, gestational age of delivery and birth weight.

Neonatal outcomes including the rate of admission to the nurseries, need for intubation, surfactant, rate of respiratory distress syndrome, intraventricular haemorrhage, necrotising enterocolitis, culture proven sepsis and death rates will be ascertained.

We hypothesise that triplets containing a monochorionic pair will have increased morbidity compared with triplets without a monochorionic pair.